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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


First of all, think nothing of the advice you've gotten from others who know so little about CF. CF research has come a loooong way now. Second, about the sweat test. The #1 thing I can advise you to do is seek out a CF accredited facility to do your test. We had the sweat test done at our local hospital (medium size city in VA) and it came back "inconclusive". So, they sent us to UVA for the test. The folks at UVA could not believe it when we told them how the test had been done before with one strap on her arm and the other around her leg. Only the staff at a CF accredited facility are trained specifically in how to do the sweat test, so please do not rely on anything but their results. They usually do do a second sweat test to confirm the results of the first. That is common procedure. We too were very frustrated when the nurse would not tell us the results - said doctor would call us and he finally did while we were driving back home and stopped in a rest area. But, please know that even if your child has CF, she will continue to be a blessing unto you for a long time to come, she just comes with a little more maintenance. I have two children, one with CF. We went for six months until we found out she had CF. In that time, she lost a significant amount of weight and she didn't develop the cough until about 2 1/2 months of age. I hope that things go well for you and your family. Keep us posted.

Jen





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